Eli's Journey

1. CHEERIO! Look who's eating! Elijah has made amazing progress taking food by mouth, even though it's all baby foods and sauces. He especially likes barbecue sauce. So imagine my surprise when I walked into his afternoon class at Freedom Elementary and saw the scene below. He was enjoying snacks and juice with his friends, which usually means he licks the food and sticks his tongue in the juice. But this time--and almost too fast for me to get my video camera out--he popped a Cherrio in his mouth, chewed it up and swallowed it! It's a sign of great things to come. I had no idea it was about to happen, and I'm still thrilled just thinking about it. 2. FUN WITH RANDI Our friend Randi, a former Little Light House volunteer, came by to say hello and play with Elijah. She hadn't seen her favorite boy since before his leg amputation, and she was amazed to see him walking on new prosthetics. Let's face it, we're all amazed. 3. IMAGINATION It's true that Elijah...

Late Night Dad: It's one of those times during the year when I seem to run into lots of old friends and distant family, be it during lunches or over the phone or at the holiday parties. And even though the people in my life come from any of hundreds of past lives -- schools, jobs, events -- the first question they ask is very, very consistent: "So, how is your little boy doing?" There's just no getting around the fact that Elijah Ramirez is a force of nature in the lives of each person he's encountered, but I admit I'm surprised at how he dominates the width and depth of my life, as well as those of Melissa and Sophia. I believe it's a testimony to how successfully the members of the Ramirez clan have worked to fill our address books with good-hearted people who love God and believe in the power of prayer. (Even the atheists we know seem to understand there's something mighty at work in Elijah's life; you know who you are, and hopefully you aren...

Our little girl is doing a lot of performing these days. Here are two videos, the first from her recent Veterans Day program at her elementary school, and the second just last night with her Jenks Dance Academy class. Sophia is in the Superstars class, which means she sang the music she was dancing to! (To which she was dancing...) Some of you already know the story of how Sophia saw "Wicked" last week. The week before, she went to see her voice teacher, Miss Missy, to show off her performance of "Popular" from the musical "Wicked." Missy asked if Sophia was going to the Tulsa PAC to see the show, and I regretted to inform that the tickets were just too expensive and none left close to the stage. Missy told me how another student of hers won a lottery before the performance, and that they might be holding one again. I called the box office the night of the first performance, and they told me to be at the coat check window at 5:00. I arrived, put my name i...

Pray for Elijah on Monday, Nov. 22 as we head back to Oklahoma City to get fitted with even more advanced prosthetic limbs. We are working with Jonathan Day, the only prostheticist in the state who has any experience with bi-lateral amputees, and he is the very nicest guy. We're getting stronger glasses for a newfound astigmatism, but we kind of suspected that would happen eventually. In the meantime, we were please to see how well his eyes are tracking, and anyone who spends time with him knows he's seeing so much these days. The dentist also gave both kids thumbs-up on their oral health, and I'm pretty sure all four of us are done (for the moment) with sinus and ear infections. But do please keep praying for the Ramirezes. Now for some HALLOWEEN PICS! Look for: Sophia as the Red Queen Elijah as a Puppy Dog The Grandkids with Great-Grammie Eli meets Thomas the Tank Engine!

BECAUSE YOU DEMANDED IT... 1. Elijah Makes Strides Here's video of Eli arriving at feeding therapy. Miss Tara is helping him "walk-walk" from the car to the front door, and he wants so badly to succeed. Tara has moved on to another home due to scheduling changes, but she was with us for over a year, and we appreciate everything she did for little Eli. Best of luck, Tara, and God bless you. 2. Eat, Elijah, Eat! (3 videos) We're having great success with Kathy at Therapy Works, as we slowly learn to eat by mouth. Elijah is practicing how to ask for different flavors, how to put the food in his mouth with both his fingers and a spoon, and how to close his lips around food so he can swallow it. For the first three years, any kind of intrusion into Eli's mouth past the teeth made him gag, so even the small progress we've made is amazing. And also... DRUMROLL PLEASE! I actually witnessed him put a Cheerio in his mouth, chew it and swallow it last week, for the firs...

Halloween came and went, but Eli isn't walking. We did have a really good time though. Since our last post, we have found a new prostheticist who will help Eli learn to walk. We are expecting a new set of legs pretty soon. Eli, for the first time in his life, pulled himself up on his legs. We are thrilled. I expect he will be walking on his own legs before he learns to use the prosthetic ones, which is fine. Eli has had a cold since before the cold temps even set in. He has an ear infection now. Winters are hard on Elijah. Thanks for your prayers! Love, Melissa

The question I hear most often, "how is the walking?" I have to tell you that the walking is SLOW. Those of you who read every post know that my optimism had Eli walking by Halloween. I'm pretty sure the likelihood of that is nada. Here are our problems: The folks here think the prosthetics are too big. So, our current "help Eli walk" PT isn't even putting the legs on him. Not good. The prosthetics are held on Eli by that strap around the waist. It does a very poor job of keeping them where they are supposed to stay.  We are meeting a local prostheticist this week. I hope we can figure out some solutions to help Eli master this new skill quickly. I'll add this: He is healthy and happy and that makes my heart leap. Last night at dinner, David was telling Eli, "I'm going to kiss your head." Then, he would come at Eli making smooching noises. Eli said very definitely "No you are not!" With a giant smile and an arm up in defens...

Eli might be ready for WDW!!! The Mouse came to Eli's school for a visit. Look at that giant "I'm not scared of you one bit" smile! Love, Melissa

I don't know what you worry about when you obsess over your kid's future, but I worry about Elijah's eyesight. We've had a lot of conflicting opinions over the years as to how poor his vision is, but for the most part, he seems to see what he wants to see. He recognizes every person, every color, every TV show, every toy. Still, the worry nags at me. Tonight, Eli called out to me in the dark, just a few minutes ago, in fact. Since he was a little wired, we decided to take a nighttime stroll in the backyard. I thought we might see the moon, but she won't appear for another few hours. And here's the first thing Elijah says to me: "Ooooh, stars! Hello, stars! We love you, stars! Clifford loves stars! Ruff ruff!" That was with his glasses off. I took my own glasses off and couldn't see the stars. So his vision was better than mine tonight. And for a final poignant note to the story, I'll add this. Last night about 2:30 a.m., after I got Eli back to...

Today, hundreds of people arrived at the Little Light House in Tulsa, OK, to see 64 students walk around a small race track. Each student is under the age of 6 and is dealing with an extraordinary situation like our little Elijah. The crowd cheered for the kids as they made their way around the track, the cheered for the staff who helped them accomplish so much, and they cheered themselves for raising the largest fundraising amount the school will receive all year. Big sister Sophia was on-hand to pull Elijah around the track in his big wagon, and you can see he thrived on the attention of the crowd. Rumors were flying that Elijah would walk across the finish line, but no one knew what to expect from our big boy until it happened. Just like the rest of the week, he exceeded those expectations. Take a look! THANK YOU to everyone who shared their prayers and tears with us this week. We'll see you again soon! Love, Dad

It's 10 p.m. central, and Elijah spent the last half-hour speaking quietly and sweetly to me as I held him in my arms, wrapped in a blanket in the dark. At one point, he asked, "Where's Granna?" I reminded him that his grandmother had to go home, but we'd see her again soon. Guess she made an impression. My mom, Anna Ramirez, made the 10-hour drive from Atlanta, GA, to be with Elijah during his historic week in Shreveport. She made everything easier, and she also kept things light and fun. We couldn't have succeeded like we did without her there. Not only did she effortlessly resume her role as one of the only people on the planet who knows how to tube-feed Elijah and mix his formula correctly, she also mastered the updated Eli-Speak in just a few short minutes. With the TV blaring Playhouse Disney and the motorized Thomas engines criss-crossing the hotel room floor, she kept her dignity and her sanity for five long days. Most importantly to everyone reading t...

HOME! Thank you Lord Jesus. We arrived in Sapulpa just in time to greet Grandma and Grandpa Groves at the door. They're staying with us so they can attend Mini-Laps in the morning. Then we ate dinner, came home and WALKED for Momma, Sophia and a big crowd including Grammie and Grandpa Ken. 1. OPENING NIGHT (MORNING): Elijah arrived at Shriners and immediately got to work. Watch him take steps as Leslie does little more than steer the walker from behind. You'll also see him chattering about what he's looking forward to this morning. He was just in such a good mood, until we put him in the walker. We were all as tired as he was. BUT HE DID IT. (He also says hello to all our family members, with a little help from his Dad.) 2. TRANSITIONS: We meet a new friend in the therapy room, we say goodbye to our awesome therapy team, and we say HELLO to Sophia and our very own living room. 3. THE MAIN EVENT: Elijah takes his first steps for Momma and Sophia. Then, we invite some friends...

A special THANK YOU to everyone who followed Elijah this week on Blogspot and Facebook. I know many of you wonder why we spend so much time posting our child's face all over the Internet, and these are the three reasons I always give. First, we want you to PRAY FOR ELI. All we've ever wanted from the legion of Elijah Fans is prayer that he will be happy, pain-free and well cared-for by our medical teams. Second, we want to connect with other families who are dealing with the same ordeals we are. We have learned a lot, but we also have a lot to learn. Third, we want to tell the world about the kindness and generosity of Eli's school, The Little Light House in Tulsa, and Eli's surgical team, The Shriner's Hospital in Shreveport, LA. Please consider a financial gift to either of these fine organizations. Tomorrow is our final day on the road. Be sure to tune in Saturday for footage from Friday, as well as Elijah's amazing appearance at Mini-Laps! 1. WE ARE THE CHAM...

It all comes down to this. You're about to see Elijah move his own feet as he walks across the Shriners play area from start to finish. 1. AMAZING STRETCHES: Eli does some fabulous leg lifts, then says hi to Rose the Dog again. 2. GOING THE DISTANCE (Parts 1 and 2): Time to bring the thunder! Cheer for Eli as you watch these videos. In case you're wondering, Eli and Dad and Granna are exhausted. But we're not giving up! Not when Elijah is "getting it" so well. Can you believe how much he's participating? We'll return to therapy this afternoon for more walking a few more brace adjustments. Dad

Almost an hour of footage tonight! My mother, Anna Ramirez, known to Eli as "Granna," did the filming today, and she decided EVERY moment was worth preserving for posterity. She was right, of course. 1. PLAY TIME: Elijah gets the day started with a puzzle. Super cute. 2. STRETCHES: We have a lot of work to get the tendons on the outside of Elijah's legs limbered up. Right now, whenever he tries to bring his legs together, these tight tendons naturally pull outward and resist him. But we'll get there. Meanwhile, look at what a great attitude he has. 3. DOGS AND STRETCHES: Before we finished our morning stretches, we got a visit from Rose, a rescued puppy who came to the Shriners Hospital to spread some cheer. She had no idea what a great dog owner Elijah already is, and she was in for a treat. Rose would come back later for another visit... 4. ELI'S WALKER: It's all smiles as Elijah works to master his newest walking tool. We are bursting with pride at this poi...

The moment you've all been waiting for: Elijah takes his first steps. Pray for Elijah tonight. He's working harder than Congress this week. Dad

Elijah arrived at the Shriners Hospital and immediately asked to play on the floor. We found a big plastic train, and we made a Lego tunnel for it to go under. Look at those new legs! He's really learned how to move around on them. Drumroll please... THE NEW LEG BRACES! They look great, people. We'll start learning how to walk on them tomorrow. TOMORROW. Elijah was screaming because he didn't want to go back to the room, not because he's being hurt. It wasn't long after I turned off the video recorder that he started laughing and joking around. More video on day two! -- Dad

IN THIS POST: = Upcoming events (Rehab and Videos) = Elijah Stories = Pictures Galore! SHREVEPORT AND MINI-LAPS (Videos all week long!) Next week, Elijah will be in Shreveport for five days. He'll have his splints removed from his legs, and we'll proceed to teach him how to WALK in his first ever set of prosthetic feet. The rehabilitation will be a lot of work, more work than a 3-yr-old should ever be expected to perform, but the rewards are immeasurable. Eli's grandmother Granna will be with us to provide shift relief for the dad and moral support for the boy. Pray for us all week long. And come back to the site EVERY DAY for new video from throughout the week. We'll conclude the week with video from the Mini-Laps event on Saturday morning. Don't forget, it's not too late to donate to Mini-Laps on Eli's behalf: http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52 STORIES (or, Can your 3-yr-old do this?): I ran across Sabrina,...

Elijah has become comfortable showing his legs off. When I walked in from work and his splints were off he emphatically said "See my new legs!" I, of course, gushed with my approval and love for his new legs. He gleamed with pride. I can only imagine how he is making sense of all this...my legs were fine, but now everyone loves them... Just 10 days and ELi will begin a very important part of this remarkable journey. He will learn to walk. The thought of seeing him walk brightens my spirit to blinding. I know you are all cheering for him just as we are. If you are able, please consider giving to Elijah's Mini Lap to support his amazing school. Be sure to actually list Elijah's name in the "honor or memorial" section so your donation gets credited to his lap. http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52 . Eli will walk! With love, Melissa

Eli's enjoying his evening playing with Thomas the Train and gang.

Eli is doing well. He is getting better and better every day. Our biggest challenge right now is keeping the splints on Eli's legs. His legs seem to swell up on occasion and then cause extreme discomfort, which requires us to remove the too-tight splints. Other times, his legs un-swell and his splints fall right off. We've been told to simply mange the splints...on, off, on, off (bath!!), on, off, on, etc. For the most part, Eli prefers them on. Either way, he still cannot get comfortable to sleep. He's used to tummy sleeping with his booty in the air. Now he cannot stick his booty in the air. And, when he rolls over he has blanket issues. Plus, most of the time he cannot roll himself over and he'll yell, "roll me over." To sum it up, David and Eli are sleep deprived. We are counting down to the next Shreveport trip on Sept 20. We expect Eli to come home with prosthetic legs that he is learning to use. This will be my next big life moment...seeing my son wal...

Dad here: Lots of good news this evening, but I'm also feeling a tad introspective after the events of the last two weeks, so I'll get that part out of the way. You would think I'd be better prepared for those long stretches where Elijah is dealing with severe discomfort, but the mind sees what it wants to see, and when Eli's in a good mood I like to tell myself we're finally past all the trial and hardship, at least for a little while. But ever since the feet amputation this year, I've spent a lot of time dwelling on all the hard work Elijah has ahead of him. It's true that all these surgeries have been gruelling on him, but as an infant he at least had the benefit of knowing he could just lay back and relax while Mommy and Daddy managed his pain and tried their best to make him comfortable. (Forget for a moment about how unfair it is to be bedridden.) Now, however, we are interweaving the surgeries and myriad evaluations with a concerted program to get Eli...

I know, I know, the wait has been too long. Here's a photo of one of the new legs. The only reason I was able to snap this photo is because the splint fell right off. At the Shriner's Hospital, Elijah's splints were removed and x-rays taken. The x-ray showed that the bone needed more time to fully set so after molds for prosthetics were made, new splints were set. Less than 24 hours later, one of the splints slipped right off. Eight more hours and the other splint slipped right off. Eli's reaction, "put it back on." So at the doc's recommendation, we have attempted to reattach the splints to protect his bone. On September 20, Eli will receive his new prosthetics. He will spend a week at the Shriner's Hospital learning how to use them and return home with his finished legs. Until then, he is immobilized for the most part, which breaks my heart. The pain is lessening, but I see it in his eyes at times, it still hurts. He improves every day. Eli...

Eli will have his new legs revealed tomorrow. David and Eli are in Shreveport for Eli's appointment tomorrow. Eli will have x-rays and molds made for his prosthetics.We're all very excited for Eli to become comfortable with his new legs. Grandpa Ken asked him yesterday if he was going to "walk walk" when he got his splints off. Eli emphatically answered, "NO" and shook his head to emphasize his decision. He still fears it will hurt. I cannot blame him. He will walk though and he'll wonder why he ever doubted himself. With love, Melissa

First, Eli is improving every day. Every day we can tell he is less frightened for the safety of his new legs. Every day he is even more brave than the day before. And, every day his smile is even bigger. Now for the reason for this particular post. The focus of this blog is the extraordinary Elijah Ramirez. But behind every extraordinary little boy there is an extraordinary sibling shining through...okay maybe not behind EVERY extraordinary little boy, but behind this one for sure. Elijah's Granna wrote about Sophia and her part in Elijah's magnificent journey. Her words made me realize that Sophia is my hero. She is the most unselfish and kind human being I know. She cares for her brother more than anything in the world. She is also extraordinary in her own, unique right! By Anna Ramirez on August 6, 2010 Older Sisters For the first three years of my life I was an only child. Perhaps I felt entitled and was spoiled a little. I can imagine that my parent’s world rev...

From the desk of David: Thank you so much for all the prayers and encouraging words on Elijah's behalf. I cannot drive to the perimeter of my neighborhood without someone waving me down to ask, "Is Elijah doing well after his surgery last week?" I continue to believe your prayers are being heard and answered on a daily basis, so keep them coming. Honestly, it's been a rough few weeks, although the most important thing is this: Eli really is doing very, very well. His sleep schedule is a mess, as always happens after a major surgery, part of a package deal including a grueling road trip to Shreveport and pain medicine that affects his sleep and digestion. But if you ask him if it's affecting him, he'd look at you like you're crazy. He's sitting up for long stretches of time, playing loud and hard with all manner of toys. He's eating nicely, and we've been able to reduce his dosage of pain med significantly since we returned. Even though he's...

For those of you who don't know my husband personally, what you miss is that he is extremely resourceful and creative (perhaps you pick that up in his writing). David figured out a way for Elijah to sit in his chair (it's a plastic chair with high sides and back, not far off the floor) with his TV tray across the arm rests with our ottoman holding it in place so that Eli could play with his cars on the TV tray top. I was very impressed and Eli sat there like the big boy he is playing and playing. Eli is very tense when we pick him up. David taught him to say "be gentle." I think that makes him feel better even though we would be gentle with or without his request. He remains on pain medication, but he is feeling better every day. Just two more weeks and he'll be back in Shreveport to have his new, fabulous legs revealed. Can't wait. It's so invigorating for us to be able to focus on something NEW rather than the NEXT surgery....there is NO next surgery...

Friends, This morning, Eli woke up with a smile. A huge victory for the whole Eli team. Elijah's Granna, my mother-in-law, wrote an inspiring rendition of our week in Shreveport that I know you will enjoy reading. From Granna (Anna Ramirez) If you have been following the blog you know that Eli had another surgery last Wednesday. Thank each and every one of you for your prayers and help. He is home now and doing well. John, Mark (our son), and I traveled to Shreveport to be with Eli and his family and Melissa's parents, Ken and Sue. We know he recognizes the Shriners Hospital when they pull up to the gate. We know that his knowledge of what will happen must be sparked by the six hour drive preceding arrival at the familiar gate. After all he is a really smart guy. When we arrive we all are always greeted by the most friendly people at the front desk and walking down the halls we encounter many smiles, some looks of frustration from children and parents who are working ...

We are home. Made the journey yesterday. Elijah slept most of the trip, which was a huge blessing for us. He was excited to be home, but as soon as we finally pulled into the garage, he started to cry because he knew he would be picked up and it would  hurt. He was picked up, and it did hurt. I just cannot describe how it feels to watch your child endure such pain. Unless you too have experienced this,  I'm not sure one can even imagine it. When we change Eli's diaper he begs us not to, "No momma." With all of my heart,  I want to leave the diaper alone, but that would just lead to other problems. The pay off for this pain will be fabulous,  but for now, it just hurts really badly. Please pray for Elijah's recovery to speed like a freight train. love you all, Melissa

Elijah is in a great deal of pain. Perhaps the most pain after any of his nearly 15 surgeries. He cries in terror whenever we change his diaper or pick him up. He remains on the pain pump, but his pain persists. I also think he is scared of the potential pain. I know it will improve day by day, hour by hour, but it is very hard for us to watch. Elijah's experiences age him. I know I haven't experienced the level of pain he has endured in 3.5 years. Wish I could go through it for him. We are unsure if we will be making the journey home tomorrow or having to stay another night. I know the ride home will be very hard on Eli. Thank you all for praying for our sweet child. We treasure you. Love, Melissa

As I was helping the nurses change Elijah's diaper a few minutes ago, I had my first real opportunity to hold his new legs in my hands. In that instant, I felt a blessed release from the apprehension and slight depression I've been feeling ever since we amputated his feet earlier this year. Back then, I had the sense that we'd been conquered somehow, that Elijah had lost an important battle so that he could eventually win the war. Well, the war is won. His new legs don't just look good, they look VICTORIOUS. His grandpa Ken said he looks taller and longer, just like any other three-year-old. I was too fatigued to register the concept at the time, but now, I couldn't agree more. How to describe what I'm feeling? It's like opening a package on Christmas, and instead of finding socks or cleaning supplies, or even the toy you asked for, it's the most thoughtful, most appropriate gift you've ever seen. The gratitude is so profound you're reluctant to ...

Eli has been comfortable today. His pain pump has remained active and he's been sleeping most of the day. Doc says all looks well. Pray Eli will sleep tonight. Love all, Melissa

Elijah is in recovery. He will likely be there for 1.5 hours before we can see him. Dr. Gates said everything went very well. He removed a wedge of Elijah's fused bones plus a little to give the veins and nerves room. He is in splints and a strap around his thighs to keep his legs together since he's used to a sprawl. Doc says Elijah can stand up as soon as he's ready. His bones are strong with a metal plate and screws. He'll be on a pain pump until the IV in his head goes bad, which is usually pretty quick, then pain med through the g-tube. I'm excited for Eli. He'll get to walk! What a miracle! The pain is coming, it's hard to watch. Love all, Melissa

Elijah is in surgery. Dr. Gates began about 7:40 a.m. We're expecting the whole thing to take 2-3 hours, but it's hard to predict before the surgeon gets in there. The best news we received yesterday is that Eli will be in prosthetics within 2.5 months! Walking by Halloween! That news makes today's surgery less horrific for me. I'm actually excited to get past today and onward to walking. I know, if he could, Eli would thank us. He was scared this morning. His "I don't care" cocktail gives him less relief than the first time he had it. His body metabolizes so quickly such drugs. It did help. He wasn't screaming in distress as he was wheeled away. We have some of our dearest loved ones here helping us endure this part of  the journey. Keep praying for Dr. Gates. Pray he makes the exact right decisions. Pray Eli's nerves and blood vessels are protected and take to the new formation with ease. Pray he forgets and remains pain free. Pray for th...

Elijah is checked into the hospital. He's experienced the flurry of tests he's used to the day before surgery -- blood pressure, oxygen level, temperature, OT, PT, x-ray, etc. I think he knows the tests aren't really that bad even though he cries. I think he knows what comes next... Many of the in-patient unit staff know Eli and say "Hi Eli, you're back." Eli likes that. We're treated like family here. Sophia is busy entertaining Elijah with all of her might. Smiles. Hugs. Fun ideas. Songs. She's the greatest big sister. As I write, Eli and Sophia are riding in a wagon around and around the unit. Anything to take Eli's mind off of where he is and what that means. Pray for Eli's peace. Pray he remains pain free. Pray he sleeps tonight. Pray he forgets this stay in Shreveport. Pray for Eli's doctor, Dr. Gates. Pray for his wisdom and his skilled hands. Pray for the kind nurses here as they care for Eli. Pray for safe travels for us and ...

Movie time! Here's 10 minutes of Elijah having a fantastic time in the kitchen sink. You'll see him master sarcasm and feign surprise, play in bubbles, turn the faucet on and off, and sing with big sister Sophia. We had a great time. Now let's take a moment to say farewell to the 45-degree angle in Elijah's knee joints. For those of you who don't know, he'll undergo a major surgery next week. Although it's technically elective, it's the very definition of invasive. Our goal is to straighten the knees, giving him one long limb from hip to ankle. This is the last big surgery needed to allow Eli to walk. Melissa tells people he could walk by Christmas, and it literally blows my mind, and I have to sit down. There's just so much hard work ahead for him. Please pray for Elijah on Wednesday morning, July 21, starting around 7:00 a.m. I know it sounds odd that we would miss these bent knees -- with no cartiledge or growth plates around the patellas, he'...

This evening, I am encouraged. I am overflowing with peace and anticipation. God is good. Eli is in His care. We will all survive the coming week with flying colors. We are blessed. We are blessed to be the parents of a magnificent child (two of them) who touches people around the globe with his smile and tenacity. We are blessed that our Savior uses us to show his love and compassion to those we know. Thank you, God, for caring about us with such depth we can hardly comprehend. Eli is cherished by many. Eli is still sick. He needs to heal so his body will be ready for invasive surgery (no laparoscopic here). Love you all, Melissa

Sometimes it hits me out of no where. It's like a knife stabbing deeper into my unsuspecting heart. Today, while minding my own business at the nail salon (one of my few indulgences), I was watching a little girl and her mother as the mother worked to keep the child entertained while she had her pedicure. In my mind, this child was at least 6. The nail technician asked the child, "how old are you?" I didn't hear her response, but I heard her mom say "no, you are THREE." I gasped. The child four times the size of my Eli is his age? Shoot! My eyes automatically filled with tears and the salt poured into the open wound. When will it heal? Are you ready for more honesty from the Ramirez home? We are dreading Eli's next surgery. I cannot think of one surgery that we've looked forward to. It's such an interesting frame of mind: we work like mad to make sure Eli is prepared and healthy for surgery, but we dread every minute of it with our entire being...

Last night was a humdinger, with both kids staying up watching TV until 11:00. Sophia finally started to drift off, but Elijah was going strong, playing on the floor with his big cardboard blocks, mostly setting them up and knocking them down. I saw my chance, so I swooped down and scooped Eli up. He instantly went from giggling and talking to the block to saying, "Help me, Sophia! Help me, Sophia!" over and over with his hands stretched out toward his sister, who was groggy and oblivious. I couldn't help laughing but tried to keep it to myself; if he heard me, he'd think it was still playtime. (By the way, Eli passed out as soon as his head hit the bed.) "Help me, Sophia! Help me, Sophia!"

Eli: "daddy, daddy, daddy" Melissa: "Hi Eli." Eli: "Where's Daddy?" Melissa: "He's outside watering the plants." Eli: "Let's find him." Melissa carries Eli to the front door window. Melissa: "Do you see him." Eli: "No." Melissa carries Eli to the window in the next room. Melissa: "Do you see him." Eli: "There he is." Melissa takes Eli out the front door. He sits on the front porch. David is half way down the front yard, pulling the water hose. Melissa's in the house watching Eli through the front door window. Eli: yelling "Daddy, I want to help you. I want to help you, daddy. Daddy, I want to help you. I want to help you, daddy." Melissa yells through a cracked door, "David, Eli wants to help you." Eli: "Close the door. I will tell him." Eli: yelling "Daddy, I want to help you." Sly look back to make sure the door is still shut...

My circle feet boy has a diagnosis of bronchitis. He had a 103 temperature on Thursday evening after spending the day at the cleft clinic. Dad reports he was miserable all day, but they made it through with Grandma Bobbie's help. He's on meds and was already feeling better yesterday evening. It's rest and relaxation in the forecast for Eli although I'm sure he'll ask to go outside, upstairs and play in the water...we'll likely oblige. Continue to pray for Eli's complete health to come quickly so he is prepared for surgery in July. It's tough on us when we've had a surgery scheduled for 6 months to have to reschedule...these docs are extremely busy. I love you all, Melissa

Elijah loved the river. We'll post pictures soon. Another 3-year-old little boy asked me about Eli's "circle feet." He commented that he didn't have circle feet himself and before I could help myself I had said "too bad for you." Perhaps horrible of me, I know. But the 3-year-old is family and I figure I'm forgiven for the transgression. Later, I tried to convince myself that calling what is at the end of Eli's leg "circle feet" just might work. Eli made it onto the growth chart. He is in the .01 percentile. It probably means he is among the lightest of 3 year old children, but he's never been on the chart before. Honestly, I'd convinced myself I didn't really care about that, but being on the chart seems like a step forward. I remember when he was born and the months ticked by and they showed me the chart and said "uh...Eli's down here some where." Geez, thanks for the boost of hope there. Five weeks to ...

No words. Just... magnificent.

Dad reporting in, late at night (11:27 p.m.): Not a creature was stirring, until from the baby monitor there arose such a clatter, Elijah sitting up in his crib talking to himself at the top of his lungs. Seriously, a conversation complete with questions, answers, exclamations and thoughtful responses (i.e. "Hmm! Yeah!") I just had to get him out of bed and play with him, and also give him some more to eat. On the way upstairs, he asked me to put him on the floor of the foyer. Before I knew what was happening, he had climbed the first three steps of the flight leading to our second floor. These first steps curve and each have about twice the surface area of the other steps, so when he got to the first proper stair, I thought he might slow down or ask me to pick him up. Instead, he bore down on the step and said, "I'm climbing, Daddy!" And climb he did. One step, then the next, and although I had a hand hovering behind him the whole way, I never once had to use i...

The thought of Eli having to deal with RP on top of everything else he has to deal with is still overwhelming to me, but I'm focusing on the NOW and the positive. So, don't ask me about the RP. I really don't want to talk about it yet. I'm just not ready. I know that is very unlike me, but I will tackle it with all my might soon...just not yet. Thanks for understanding. Eli is on break from the Little Li ght House. Sophia's last day of 2nd grade was yesterday. She is thrilled to be a third grader. We are proud of both the kids. Eli enjoys "swimming." I think he actually enjoys saying "I want to go swimming" more than he enjoys it once we get him in the kiddie pool. The biggest thing is if he hears Sophia is swimming....he must then swim. He will say everything Sophia says. He just repeats her. It is so cute. We love it. Happy Memorial Day, friends. I'll be in touch. Love, Melissa

My general philosophy about Eli's blog is not to post when I'm feeling defeated. Today, I write to you in my despair. Elijah's optometrist told us that he sees signs of retinitis-pigmentosa in his eyes. RP runs in my family. My kids have a 50/50 chance of inheritance. I was sure Eli wouldn’t have to deal with that too. RP can cause blindness in men. I know that the concept of fair really is a figment of our imagination. Life is not fair. Should Eli really have to deal with anything more? DON'T TELL MY GRANDMOTHER, please. I've decided that I'd prefer she not know. So, blog world, let's keep this to ourselves. I have to put on a really brave face tonight as Sophia is having 13 of her closest friends over for her sleep over birthday party. I’d prefer to go hide and cry. Please pray that Dr. Groves was wrong. Pray that Eli doesn’t have RP. That is my fervent prayer and request of you, my friends. Thanks for going through this with us....the ups and the ...

EVERYONE has been asking how Sophia did at this year's talent show. See for yourselves! Her mommy and daddy are so proud of her. (Insert "American Idol" comment here)

From the Ramirez home, no news is usually good news. That's the case this week. We are trucking along as usual. Eli is doing well. Sophia performed beautifully on Wednesday and we were all there to watch. We are starting to think about Elijah's July surgery. It will be in the top three most difficult surgeries for our sweet boy (along with skull suture opening and foot amputation). I'm not looking forward to the procedure, but excited for great outcomes. I cannot wait to post pictures of Elijah's first steps! Love you all, Melissa

I started a new job on Friday. After 12 years in one place, it is so odd to be the newbie. I'm observing more than I'm contributing, which is so anti-Melissa. Soon, that will change. I love my new job! Love it! We are doing well. Eli is loving school and learning. He is coming along. Sophia will be in this year's talent show again. I bet we'll tape it and show you here. Keep an eye out. Love you all, Melissa

Today, thanks to Granna and Grandpa's generosity, Sophia and I attended the Little Light House's annual fundraiser called Garden Party. The ladies are invted to wear a hat. For those who take it a little far, grandest hat awards are given. This year, Sophia won Grandest Hat in the little girl category. She was thrilled. I will post a picture of her hat for you soon. She adorned it herself. Eli is doing great. He has an ear infection and we need to get that whipped. He isn't moving his new thumb yet although the cast is off. Please pray Elijah will thrive with his new thumb soon. I turned 35 this week. Thank you for all of the b-day wishes. Love you all, Melissa

Friends, I apologize for our too long wait between posts. This time it simply means we've been super busy. You may remember that we told Sophia she could have a dog after the major surgeries. David and I decided that with only one left, we could take the plunge early. So, one week ago, Charlie the Yorkiepoo joined our family. He is 10 weeks old now and so sweet and fiesty. Such a cute dog (think teddy bear, folks)...and adorable girl. Elijah on Easter. Eli, Sophia and Charlie on Easter. On Monday, Eli and David travel to Shreveport. Eli will have his cast removed on Tuesday. Then, we won't be back in shreveport until July 21 for leg straightening. Eli is thriving! Love you all, Melissa

Finally, as promised, pictures of Elijah's new thumb. To recap: The first thumb operation on the right hand needed only the relocation of a few tendons from one side of the hand to the other, but the left hand's first digit had much less in common with a thumb (number of muscles and bones) than on the right hand. So we did a true pollicization, which meant moving the entire first digit further down on the plane of the hand and turning it about 90 degrees. Melissa and I are very, very pleased with the results. These pictures were taken just before we replaced the plaster splint with a fiberglass cast. Take a look: And now for something completely different... Sophia and a friend at the Tulsa Zoo. A day of high class adventure and elegant discovery. Signed, Dad

David and Eli arrived safely home about 4 p.m. on Tuesday. I met the two of them at the QT down the road for drop off from the Shriner's van after a 6 hour trip. I saw Eli and commented "that cast isn't going to stay on." Little did I know that he'd have it off by 6 p.m. (Houdini has nothing on Eli) and we'd be on the phone to Shreveport figuring out what had to be done. By 9 p.m., we were back in the car headed to Shreveport...we stopped in Paris, Texas at midnight to sleep and then finished the remaining 3 hour drive the next morning...had a new cast applied and headed home making it about 9 p.m. Miserable for all of us, but especially Eli. The new cast, designed solely to keep his new thumb immovable for about 5 more weeks, will not be coming off! Tubes in ears surgery moved to April 5. That one is in Tulsa. Back to Shreveport April 19 for cast removal and thumb check on April 20. We get May off. To OKC on June 19 for a cleft palate clinic where they wi...

Tomorrow, Eli and David will be heading to Shreveport on the Shriner's van. We expect the docs in Shreveport to remove Elijah's splint to review his surgical outcome on his thumb. Then, I think they will recast it for a while. I plan to send the camera with David so we are sure to get a first look at the new thumb. I am hopeful that we can get the new cast removed in Tulsa rather than another trip to Shreveport in four weeks. Eli is scheduled for his next surgery on April 12...that's for new tubes in his ears. We can tell that his hearing is impaired. His set of tubes placed 15 months ago are either falling out or out. They are no longer draining the fluid in his ears. They tell us it's like he's under water listening to what we say. So, it's mumbled and directionless. We knew it was an issue when we opted to have his thumb made rather than tubes placed the first week of March, which meant the ears would have to be 6 weeks later due to general anesthesia not b...

Thank you Wally and Louise for the circus tickets. Eli had a great time! For the rest of you, we went to the Shriner's Circus that raises money for the transportation department, which we use frequently. The circus was the weekend before Eli's surgery last week. He really enjoyed himself. He's getting to the point where we can take him to events like this. So much fun for all of us. And, today, we enjoyed the nice temperatures. Eli has grown to LOVE his outside swing. As you can see, this arm-in-a-cast thing is hardly even a bother to Eli. He just lugs it around like a normal thing. Of course, Clifford was along for the swing. Love you all, Melissa

We have a favorite spot between Shreveport and Sapulpa where we like to eat. We hit it for dinner on the way there and Eli enjoyed gravy. I will share more magical moments from this trip soon. Love you all, Melissa